The Opportunity

Children with complex medical conditions represent less than 1% of the pediatric population, yet they account for some of the highest care needs across our entire health system. Their families face an overwhelming journey — one often marked by relentless caregiving, limited support, and few places to turn for rest, relief, or guidance.

Too often, these families fall through the cracks. Depending on where they live, local resources may be fragmented, underfunded, or entirely unavailable. And while hospitals have made great strides in advancing pediatric palliative care, most families need support at home and in their communities — not only at the end of life, but throughout the full course of their child’s condition.

The opportunity before us is to create a new kind of infrastructure for care — one where trusted, community-based pediatric respite, palliative, and hospice care homes (Homes) exist across the country. These Homes serve as a vital part of the continuum, offering overnight support in environments that are medically skilled, emotionally safe, and designed with the whole family in mind.

To make this vision a reality, we must remove the structural barriers that prevent more communities from creating these Homes. That means:

Establishing licensing pathways that reflect the unique nature of pediatric palliative care Homes,
Creating reimbursement models that support sustainability, and
Building a national network of leaders equipped to navigate policy, funding, and implementation challenges.

Today, there are just seven pediatric respite and hospice Homes operating in the U.S., compared to more than 50 in the U.K. — a country with one-fifth of our population. Adjusted for scale, the U.S. should have more than 250 such Homes. The gap is clear — but so is the opportunity.

With aligned policy, smart investment, and shared commitment, we can support a robust national network of Homes capable of serving tens of thousands of children and families each year. The movement is already growing. Communities across the country are stepping forward. And the time to act is now.